Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

Archive for July 2009

Coeliac disease and hypothyroidism

with 8 comments

Just a quick post, something I found on Mary Shomon’s site:

According to research reported on in the medical journal Digestive Diseases and Sciences, a significant number of patients with autoimmune thyroid disease also have celiac disease. Celiac disease is a disorder that causes the intestines to react abnormally to gluten, a protein found in wheat, rye, barley, oats, spelt, kamut, and other related grains.

“…researchers found that…organ-specific autoantibodies (i.e., thyroid antibodies) — will disappear after 3 to 6 months of a gluten-free diet.”

Celiac disease, which is sometimes referred to as celiac sprue, sprue, or gluten intolerance, makes it difficult for the body to properly absorb nutrients from foods. Symptoms include various intestinal difficulties, recurring abdominal bloating and pain, nausea, anemia, gas, tingling numbness in the legs, sores inside the mouth, painful skin rash on elbows, knees, and buttocks, cramping, hives, joint/muscle pains and aches, diarrhea, and constipation, among others. Untreated, celiac disease raises risks of contracting certain stomach cancers by more than double.

The researchers studied 172 patients with autoimmune thyroid disease, and two control groups, and found that the 3.4% of patients with autoimmune thyroiditis had celiac disease, and the prevalence was only 0.6% and 0.25% among the control groups. The study also found that undiagnosed celiac disease may actually be part of the process that triggers an underlying autoimmune disease. In their findings they wrote: “We believe that undiagnosed celiac disease can cause other disorders by switching on some as yet unknown immunological mechanism. Untreated celiac patients produce organ-specific autoantibodies.”

Of perhaps greatest importance to thyroid patients, the researchers found that the various antibodies that indicate celiac disease – organ-specific autoantibodies (i.e., thyroid antibodies) — will disappear after 3 to 6 months of a gluten-free diet.

The researchers suggest that patients with autoimmune thyroiditis “may benefit from a screening for celiac disease so as to eliminate symptoms and limit the risk of developing other autoimmune disorders.”

(Digestive Diseases and Sciences, February 2000;45:403-406.)

Mary Shomon, on thyroid conditions


Written by alienrobotgirl

31 July, 2009 at 11:18 pm

Posted in Thyroid

Positive changes on thyroid medication

with 2 comments

Sorry guys, I’m badly neglecting this blog, the community, and emails sent to me. I just have other things I’m doing.

I thought I’d run through some of the positive and negative changes I’ve seen since I started treatment for hypothyroidism way back on the 20th of May this year.

First off, my immune system is not great. My seasonal grass pollen allergy has just been going on and on for weeks and weeks now. Last year I didn’t have any allergies at all (yeah, I know it was wet, but still…). I don’t know what’s going on there, whether there’s some sort of immune remodulation going on or what. My partner’s workplace has come down with swine flu, so I’m crapping myself that he’s going to catch it and bring it home to me. I’m really still too ill to get swine flu at the moment.

I don’t understand why I started to get the anxiety attacks after I started the 25mcg dose of thyroxine. The tablets did contain acacia extract, and I was eating a lot of oats, and probably my adrenals were knackered too. One other reason may be to do with B12, which I have started supplementing regularly. Before now, I would not have tolerated a regular supplement of B12, it would have made me very irritable and snappy and given me mini-seizures/jumpiness at night. I seem to be tolerating it quite well now, and I think I need it, as since I’ve been taking it I’ve increased in confidence and sense of well-being, and I’m less prone to back pain. I wonder whether the “anxiety” attacks were caused by dysautonomia – when the autonomic nervous system goes haywire. Sometimes that can be caused by a B12 deficiency, though undoubtedly also by a thyroid problem!

Once I got my dose upped to 50mcg of thyroxine, my breathing and faint spells got a lot better. My temperature was very erratic due to the anxiety/adrenal problem, but since I’ve been on the higher dose, I’ve only had one anxiety attack, and that was certainly psychological because I got anxious about having to go and negotiate with my somewhat negligent GP again, who rightly should have tested my cortisol before giving me thyroxine. (My current strategy is avoidance, I’m doing okay, so I’m not rocking the boat about getting cortisol blood tests done). I’m also experiencing less adrenaline bursts at night than I was, and much more endurance during the day. My temperature has stabilised anyway, but it’s still very low, usually 36.2. I NEVER want to experience another anxiety attack in my life. They are horrendous things to experience. I felt like I was in hell.

Since I started taking Armour thyroid (about six days ago now), I have developed more endurance and energy, and some interesting brain changes have taken place. I’ve mentioned before that I have ADD, the variety known as Sluggish Cognitive Tempo. Well, I’ve noticed that my thought processes have increased in speed, especially at night. My “good patch”, which is between about 10pm and 2am in the morning, has been stretching on forever. I keep looking at the clock and I’m surprised by how much I’ve got done or how much thinking I’ve done in a short time.

In many respects, I feel like I would have felt six months ago, before I went downhill: still very food intolerant, still having the occasional rough day, but emotionally and physically stable. In other respects, I feel slightly better, for example, these brain changes, and having some random bursts of energy now and then – I had the urge to jump up and down for no reason the other day. I can’t remember having that kind of spare energy before. Since taking Armour, the tinnitus I was experiencing at night and in the morning has 90% gone. I had started to get halitosis. That went very quickly.

My heart seems stronger. I’m not sure how to explain this properly, it just feels less irritable and weak. I still get ectopic beats now and then, and palpitations as soon as I’m under any emotional stress, but they aren’t nearly as bad. I’ve been able to take small amounts of magnesium now and then without experiencing the “instant pseudo-heart attack” effect – the squeezing in my left arm, sense of doom, and funny heart beat I was having. I don’t seem to need calcium as much to keep my heart beat regular, in fact, I think I may need some magnesium to stop my heart from feeling too “strong” in the beat now and then (calcium controls heart contraction, magnesium the release, and they antagonise each other). When I started taking the Armour, it made my heart feel “strong” in the beat, which makes sense because T3 has some control over calcium channel influx or some such thing – I took some magnesium and felt better for it, it didn’t come back.

I’ve been doing unusual things for someone as aspie as me, for example, I decided that I actually like wearing jewellery – I’ve never worn jewellery before in my life. I used to find things like bracelets, watches and earrings unbearable to wear because of hypersensation. Polyester and wool don’t drive me nearly as crazy anymore either.

I’m becoming more organised and business-like. I’m taking more pride in my appearance. I feel more confident and more able to cope with people. Usually, I’m too scared to make phone calls and I’m intimidated by many social situations. I’ve been making quite a few phone calls. I’ve done things I would never normally do – for example, I went into a pawn shop and bought a bracelet! Places like pawn shops are foreign territory to me. So are designer clothes shops. I even tried to extend the olive branch to an old friend I fell out with. Though said olive branch appears to have been snapped in two and handed back for reasons of her own, to be honest, I’m not that bothered. Before, this kind of thing would have devastated me – did devastate me at the time. But whatever, there are plenty more soul mates in the sea, and I have plans to go out and make lots of lovely friends when I’m back on my feet. Before, I would have been too petrified and stressed by the idea to consider that as an option.

My weight is stable and not increasing on 1,800 kcals per day. I actually only weigh 8 stone 11 lbs at the moment, pretty good going for me. Normally I gain about 4lbs when I come off a diet, but I haven’t gained anything back at all. I think I’ve lost a significant amount of mucin build up from my arms and legs in particular. I always had these annoying chubby limbs, no matter how thin I was. It turns out the problem was mucin, not fat, and I’ve lost a significant amount of bulk from my arms in particular. I actually have slim arms, hands and wrists! My skin became loose on my upper arms, which was a bit horrible because I could see how skinny my muscles actually were under all of that water weight. The skin has started to snap back already, thank heavens. My skin is smoother and my cellulite is very much reduced (I now firmly believe cellulite is caused by mucin build up, not fat!). Did I mention that I had started to take on a somewhat creamy yellow tint to my skin? This is due to poor conversion of beta carotene to vitamin A. I’m still kinda yellow, but rather pinker than I was.

Here’s something amazing: my voice is changing. It’s always been rather low, and I’ve never been able to sing because it breaks easily and becomes hoarse. Though I have a perfect ear, I can’t keep a tune and my larynx muscles seem to have a will of their own. As a result, singing is something I only do in the privacy of my own car, as I’m torture to my own ears. Well a few days ago I sang my little heart out on the way back from a wedding, and I was amazed by how smooth, strong and sweet my singing voice sounded. Of course, I still can’t keep a tune, but I can keep it a lot better than I could. This gives me encouragement that if my larynx muscles are improving of their own accord, then my heart muscle is too.

I started to develop a bunion last year, despite always wearing flat shoes, and this was certainly due to mechanical stress – walking a cocker spaniel that pulls on the lead does not help one’s feet. I’m sure this also relates to my thyroid though. Just today I’ve had another flare-up of that, which is the first time since I started thyroid medication.

I’m still very food intolerant. I’ve tried a few things cautiously – mild cheddar cheese, which still gives me nightmares, though hasn’t really affected my skin or made me itch like it used to. Gluten still bothers me, demotivating me and giving me back pain, I currently have a lovely gluten withdrawal migraine. One shot of whisky combined with an anxiety attack last week made me vomit in the night. I ate some melon at the wedding I mentioned, and that gave me a happy-high (hence the singing) and made me feel a bit rough the next day. I am optimistic that all of this will change when my temperature gets back up to normal. The good Dr S assured me it would. “My patients are always convinced that their food intolerances won’t get better, but they always do,” he said. Roll on my dose increase on Thursday.

Written by alienrobotgirl

15 July, 2009 at 1:26 am

Posted in Thyroid

Vindicated: adrenal insufficiency

with 9 comments

So, first off I want to start with a scan of my thyroid hormone test results.

Thyroid test results

The dates listed aren’t the dates the tests were taken, they’re the dates the results were received, there was about a week between the first and second test.

As you can see, my TSH is too high, and despite the rather dramatic drop in T4 over the course of a week, my T4 is still allegedly “within range”. By the time the second test was taken, I had a lump in my throat and had carpal tunnel syndrome. According to the GMC here in the UK, anyone with a TSH of under ten is only “subclinically hypothyroid” and their symptoms must be psychosomatic. This is despite the fact that every other civilised country is going in the opposite direction and revising their upper limits for acceptable TSH downwards. In the US anyone with a TSH of over 3.0 is supposed to receive treatment (though they don’t).

What I am able to note now I have a copy of these test results is that whilst my doctor bothered to measure my thyroid peroxidase (TPO) antibodies, she did not measure my thyroglobulin antibodies, which is remarkably irritating as she pronounced me as not suffering from Hashimoto’s on the basis of incomplete knowledge. On top of that, the TPO antibodies do not give an actual figure, and only say < 35.0, which is meaningless. What if my antibodies measure 34.0? In the US, the acceptable antibody range is much lower. Specialist thyroid doctors consider antibody results above 2.0 to be abnormal.

According to my GP, my anxiety attacks have nothing to do with my thyroid, despite the fact that hypothyroidism is known to cause anxiety attacks.

So I’ve gone to the trouble of having a saliva cortisol and DHEA test done privately. This isn’t an officially recognised test, but it isn’t bunk either. It is used by labs for clinical studies, considered reliable, and is being assessed by the FDA for official use.

This is what twenty years of allegedly “subclinical” hypothyroidism has done to my adrenal glands:

Cortisol test graph

Cortisol test results

In case you can’t read the table above, here’s a text copy:


8:00am 13.5 (range 12.0 – 33.0)
12noon 1.6 (range 10.0 – 28.0)
4:00pm 2.2 (range 6.0 – 11.8)
midnight 10.4 (range 1.0 – 5.0)

DHEA Sulphate:

8:00am 6.5 (range 9.0 – 24.3)
12noon 1.2 (range 6.0 – 10.9)
4:00pm 1.4 (range 4.5 – 8.0)
midnight 2.1 (range 2.3 – 5.0)

Salivary Cortisol profile: erratic hormone output – Noon and 4pm values below reference range and midnight result above reference range.

Salivary DHEA-s profile: All values are significantly below reference range indicating poor/compromised hormone output on the DHEA pathway.

Overall comment: Suggest repeat profile in 3 to 4 months following medical consultation to monitor progress.

I actually predicted this, including the shape of the curve, with the unusual peak at night. I actually predicted I’d be at a stage 4. In fact, I’m almost at a stage 5.

I suspect that part of the reason I went downhill a couple of months ago relates to my cortisol output crashing as my adrenals started to give way. Too much or too little cortisol can cause problems in converting T4 to T3 and in utilising T3. I have no idea what my T3 level is, but based on the lack of cortisol, I expect it’s very low. For some reason doctors don’t test T3 levels, something I find bizarre, since T3 is the actual active hormone used by the body.

Adrenal insufficiency is the reason I’ve been having anxiety attacks at night. The first thing I know of these anxiety attacks is an actual feeling of adrenaline being released from my adrenal glands, manifesting as sparkly sensations above my kidneys. They aren’t coming from my mind.

This is why I feel so faint and shaky in the afternoons and have to be careful of standing up too quickly in case I black out, and why I sometimes have to go back to bed.

This is why I am completely intolerant of all stimulants like caffeine, which put me on the verge of collapse.

This is why I am intolerant of stressful situations and have a great repertoire of stress-avoidance behaviours.

This is why I have suffered from reactive hypoglycaemia for years – being unable to raise my blood sugar with cortisol, my body has to resort to the use of adrenaline.

I wonder too whether this has anything to do with my complete inability to feel anger during the last two or three months.

This is why I have such vile withdrawal reactions to tiny amounts of topical hydrocortisone.

Because my DHEA output is far too low, my sex hormones are probably far too low too, particularly testosterone and progesterone.

Meanwhile, the doctor has been busy giving me beta blockers to suppress adrenaline and saying “there there, you don’t have a thyroid problem, you have Generalised Anxiety Disorder, a psychological condition.”

Bad medicine indeed. If my adrenals were in a worse shape than this, administering thyroxine without first performing these essential tests could have resulted in me ending up in the emergency department in full adrenal crisis.

Fortunately, despite a horrible first night on an increased dosage of thyroxine (now raised to 50mcg), I’ve weathered the increase. I have been taking my thyroxine at night, reasoning that the time I have the most cortisol is the time I am most able to utilise and convert thyroid hormone.

I’ve been sleeping through the night – sleep seems to be absolutely essential for my adrenal health the next day. I’m still having attacks of faintness and adrenaline release. I’ve had a good week since increasing my dose, though I seem to be going downhill a bit again at the moment, my body temperature is far below normal again (36.0), possibly because at this time of the month my adrenals are trying to make sex hormones in favour over cortisol. I wish they’d just give up on that and focus on giving me what I need.

I suspect that most people who are hypothyroid with high cholesterol levels are to some degree suffering from adrenal fatigue or insufficiency. Cholesterol is the precursor to all adrenal hormones. High cholesterol levels indicate to me that the adrenal glands are not converting the cholesterol into pregnenolone, and then onto DHEA, progesterone, cortisol and so on. This may simply be because the body’s metabolism has been lowered to the point where the enzymic reactions are not taking place as quickly as they should be, due to a lack of T3. This creates a vicious cycle, in which a lack of cortisol means T4 cannot be converted to T3 and the T3 can’t be utilised, and a lack of T3 prevents the production of adrenal hormones.

I suspect that in my case, I will probably be alright to continue without adrenal support, since I have improved on an increased dosage of thyroxine. I think that the problem relates to metabolism and body heat, as I am warmest at night, which is when I appear to produce the most cortisol. Dr S does not really treat adrenals, but I will be asking him what he thinks about my results and whether the problem is serious enough that I should pursue this by requesting my GP send me to hospital for some proper adrenal tests.

I would recommend that anyone who suspects they are hypothyroid should take a home cortisol test and find out the state of their adrenals before embarking on treatment, you may be in for a rough ride.

Saliva cortisol tests in the UK can be ordered from the following companies: Red Apple, Genova Diagnostics, and Lab 21.

Written by alienrobotgirl

5 July, 2009 at 6:11 pm

Posted in Thyroid